Acute Disseminated Encephalomyelitis (ADEM) Support Group

Am I having a reoccurrence?

Hello all… it’s been an interesting few months. Back in July 17 I had dizzy symptoms and generally feeling detached so made an appointment with neurologist who carried out some MRIs. They shoed lesions and a further mri with contrast didn’t actually show any contrast to the lesions. With no previous viral infection apart from being exposed to herpes simplex virus which my wife has had for years and occasionally has cold sores I couldn’t think of anything apart from a bad should which didn’t come due to virus. A few weeks later the symptoms persisted and lost muscle strength to left arm and balance… Doctor just said to take it easy and it would eventually go… I literally begged for medication to regain balance etc and was given steroids 50mg per day for 5 days… the symptoms persisted with slurred speech and lack of breathe and balanc etc and around 2 months later I was better with full balance but very sensitive to light making me drowsy… fast forward 2 months over the past week I have been getting slightly dizzy and drowsy but not so sure if it’s the leftovers from adem or if I’m having a re occurrence… this is effecting my everyday life albeit not as bad as some others and thankful for that… is it common for some of these symptoms to take a long time to completely disappear??

Gez 09.

Your symptoms are very similar (remember we are all different) to what I have been going through.
Mine started in 2009. I too had Brain MRI’s showing lesions. I developed weakness in my legs that seem to be better as
I was given Antibiotics. Strange. One Neurologist suggested A.D.E.M. but it isn’t something he could help me with. Moving forward with
years of frustration, I found a physician who checked my blood for Streptococcus and Herpes Zoster. Non-Rashing Shingles. Strep was high but the Herpes-Zoster
showed extremely high and “Active”. Great, now what? He told me to change my diet and keep an eye on how I feel. There really isn’t a pill
you can take. I followed his advice with the exception of having a current vaccination for Shingles. I was afraid of having something else arise.
Strep is opportunistic and it is not something you only get in your throat. With me, it caused sores on my skin and in my eyes. No, none of this just
goes away. I’m sorry your Doctor told you that. It can lay dormant for years and something in your life can set it off. Even emotional. I also developed speech issues with the Herpes Zoster. Bell’s Palsy. Frozen Shoulder also. Yes, my left arm developed
weakness that spread to my hand. I have learned Viruses feed on Certain foods. As I knocked these foods out of my diet and added a few supplements, I really improved.
I have to share what I went through and learned. I wish more physicians focused on viral issues. A.D.E.M is brought on by Vaccinations, Bacterial and Viral issues.
Also, Herpes Simplex which is what most cold sores come from have been in my system since I was a child.

Its soooo frustrating…The neurologist does not think that the herpes virus could have brought this on hence why I think he didn’t medicate it at all… They only prescribed prednisolone 50mg per day for 5 days after I lost muscle strength to my left are and lost my balance completely. Even then it wasn’t tapered just stopped and I had the worst moods ever…To this day Im still drowsy and ready for bed 1 hour after waking up… Very frustrating and with a 12 week old baby its harder… One thing that doesn’t help is that I smoke… I can see what it does to me within a few minutes of smoking and I really ought to stop.

Sounds like your Neurologist is a bit clueless.
My own neurologist said my HSV caused my ADEM.
I disagreed as I’d been bitten by a tick a few days prior to my attack and another Dr said it HAD to be a new infection that brings it on. ADEM is an incorrect immune response to a new infection, virus or vaccination.
I’ve also since had that confirmed by another GP in Australia (while on honeymoon) who randomly asked about the meds I had to get.
Just to say…my own dizziness disappeared when I came off of Pregabalin. It was one of the side effects and I didn’t even realise as I’d been on it since coming out of my coma.
I assumed it’d been part of the brain injury side of things.
I’m now taking CBD that I buy privately and Sativex (on prescription). They’ve replaced my Pregab and Baclofen.
I hate prescription meds now.
I only take Sativex as it’s from a plant. Medicinal marijuana :slight_smile:

Jeeez you were in a coma??? Maybe I should be grateful…
I only got the drowsiness and detached feeling but this lesions showd up… another early symptom was that I yawned non stop for around 30 minutes…that drowsiness and detached feeling I had didny really subside that much since July /August despite being on prednisolone…I did however catch a cold recently which I’m sure didn’t help :cold_sweat:

Gez09,
Your Doctor should have mentioned that there are MANY Viruses in the Herpetic Family. A Virologist would know.
Epstein-Barr is also there. Prednisone did nothing for me, but make things worse. It keeps your immune system
from doing it’s job. Fighting back. I also fell twice from losing my balance. That creates another issue. Broken bones. Physical Therapy. Be careful. Rest will help you heal.
Smoking isn’t helping for sure, but you know what that takes. I would suggest staying off the immune-suppressant drugs.
I did and it helped. Sometimes Doctors can be frustrating when you just want your life back and they have no answers.

Immediately get a second and a third opinion.

2nd and 3rd opinion on which bit??

Get a 2nd and may 3rd opinion on the whole thing if that would put your mind at ease. Then you don’t have to self-diagnose; that is way too stressful and even if you are a medical doctor it is still too difficult to self-diagnose. So, why not, right?

Hi There, Sunshine Lou" - you mention you now take CBD and Sativex (on prescription). Replacing your Pregab and Baclofen. I don’t know what Pregab is in South Africa. But my husband is on Baclofen for the terrible electric shocks he gets down his buttocks and legs. MRI in Jan 2017 picked up new lesions on lower spine now. So to me this is another occurrence of ADEM. First diagnosis June 2013. He is taking the Cannabis Oil. Just helps deaden the pain. Just interested to know which of these meds help you in place of the Baclofen.

Jeez after reading some of these stories I think I have to thankful… my symptoms have not been anywhere near as bad…
has anyone noticed that the drowsy detached feeling starts 10-30 minutes after waking up and get better as the day closes out??? I know when I had my first symptoms a few months back I was a lot more sensitive to light… I don’t think prednisolone is helping the symptoms either :joy: